Just thought it was time to give you a progress report.
So how am I doing, well a lot better than I was. I'm feeling more like me and some of my old fire is returning so that's a good sign, even if Peter does have to put up with the odd rant now and then. If only I could sort the breathing out I'd be fine. At the moment it feels as though someone has put a plastic bag over my head. Of course I now find out that this might not be entirely due to whatever is ailing me. It seems that the air quality in my part of the world is very, very poor today and has been for a few days now. That could explain a lot and I've increased my oxygen usage from 'only when moving' to 'all the flaming time' just in case.
As for my appetite, well it is returning in fits and starts but at least it is returning. I was taken out to choose some sweets and general rubbish to eat in an effort to find something to tempt my taste buds. I came back with tins of ginger beer, a packet of ginger biscuits, two boxes of Complan and a bag each of Tangtastics and Moaoms. The only mistake was the ginger beer, which on closer examination turned out to be diet and therefore calorie free. Still it did the trick and kick started my eating again. Part of the problem is convincing myself I'm not going to be sick the moment something enters my mouth and sucking on the sweets certainly helps with that, every time.
There are people out there who don't understand why I've become so ill, so quickly. Well it hasn't really been that quick has it. The first warning sign came way back in January/February when I passed out at home. I put it down to the start of a chest infection but then it happened very publicly at work and scared my poor colleagues to death. This time the heat was blamed, and to be fair didn't help but was probably not the entire cause. And then a third turn and I knew I was in trouble. You all know the rest. However most people would have bounced back and been back at work this week so why not me? Well PH is a balancing act. It is a constant battle to keep everything on an even keel and if one thing goes out of balance then it is like dominos, everything goes. The big problem for me was sickness so severe I couldn't take my oral medications. It only took two - three days for damage to be done but it is going to take two or three weeks, maybe longer, to get everything working together again in perfect harmony. I'd like to think of myself as a Formula one car but in reality I'm more like the clapped out tractor some skinflint farmer is trying to keep running.
I was shuffled off to hospital this morning for repeat blood tests in the hope that my return to meds and eating is having some positive effect. This is fairly urgent stuff as if I'm not improving then I might need supplements to boost things. In the Brompton I got the results of my bloods in a couple of hours. In my local hospital I'll get the results in about a week. Not being funny but I could be dead by then. There was no use protesting to a nurse who casually asked whether I really needed my oxygen so I've email the Brompton instead. Maybe they can kick bottom.
As regular readers know I am going through the process of renewing my DLA (Disability Living Allowance) claim, which runs out at the end of July. So far I've had to jump through several hoops including sending proof of the medications I take, letters from my consultants and a list of equipment I use in my day to day life. Despite all this I might still be required to attend an interview, have someone visit my home or provide yet more proof. This has not come as any surprise because I've renewed twice in the last seven years, they won't give me a whole life award for some reason, and each renewal has ended up in appeal, and in one case tribunal.
So imagine my disgust and anger at a story I read in my paper today. Rant Alert!
A woman claimed she was so Agoraphobic that she was a 'prisoner' in her home for the last fours years. Over that period she accrued £50,000 in disability benefits. She claimed she never left her bedroom and relied on a friend to do all her shopping etc. Now I have nothing against anyone who suffers from a phobia so severe it ruins you life like this. However what this woman failed to mention was that she worked as a travel writer and spent a great deal of her time abroad researching. Does that sound at all agoraphobic to you? No me neither. She was only found out when government officers decided to finally pay her a visit to assess her claims and was told by a neighbour that she was away on a month's visit to India.
Several points come to mind while reading this story and although I am angry at the woman, whom I hope gets a lengthy prison sentence, I am also angry at the system that let this happen. It seems to me that if you want to claim every benefit going then very little is done to stop you. However, if like me you want to retain some independence by working and only claiming enough to make that desire possible, you immediately come under suspicion of fraud.
I, and many in my position, have worked all our lives, paid taxes and asked for nothing. Then when we fall ill we resist claiming anything because we either don't feel we are ill enough or that we just want to struggle on by ourselves as long as we can. When we eventually give in and claim the process is long, fraught with difficulty and quite frequently those most deserving get denied just because they refuse to bow down to their condition and play the martyr. Sometimes in order to get anything at all we are forced to exaggerate. For a long time now those with PH, and I'm sure other conditions, have been told to fill in the form as though it was your worst day. In other words the system is so flawed it forces honest people to lie in order to get the help they need. And yet some people, like this globe trotter, just seem to be able to fill out a form, open their arms and watch the money flow towards them like a tidal wave. The new system, brought in a couple of years ago, has just made the situation so much harder for the honest ill.
There was some rejoicing then the firm brought in to carry out the dreaded assessment pulled out of their contract early because they were getting too much abuse. Forget the fact that they were so incompetent at their job that two thirds of their decisions were turned over by appeal courts. However now that they have gone we are back, I'm sure temporarily, to being assessed by those without any medical knowledge at all.
The only way the system is ever going to work is if claimants are assessed by clinicians who have some expertise in the condition being claimed for. So if you have Cystic Fibrosis your case should be assessed by someone with a working knowledge of CF. The same for suffers of MS, Parkinson's etc. Those with particularly rare illnesses such as PH should have their assessment done by experts. Not only could the presence and severity of the illness be judged without question by someone the claimant has confidence in but anyone trying to fake it would soon be spotted and removed from the process.
Of course all that is going to happen in the interim is more havoc while disgruntled claimants beat their way to tribunals and appeal courts. As for me, well I'm fully expecting to have to take up arms again and prepare to do battle with a faceless oik. After all I can't be disabled as I've only got high blood pressure. Right?
So how am I doing, well a lot better than I was. I'm feeling more like me and some of my old fire is returning so that's a good sign, even if Peter does have to put up with the odd rant now and then. If only I could sort the breathing out I'd be fine. At the moment it feels as though someone has put a plastic bag over my head. Of course I now find out that this might not be entirely due to whatever is ailing me. It seems that the air quality in my part of the world is very, very poor today and has been for a few days now. That could explain a lot and I've increased my oxygen usage from 'only when moving' to 'all the flaming time' just in case.
There are people out there who don't understand why I've become so ill, so quickly. Well it hasn't really been that quick has it. The first warning sign came way back in January/February when I passed out at home. I put it down to the start of a chest infection but then it happened very publicly at work and scared my poor colleagues to death. This time the heat was blamed, and to be fair didn't help but was probably not the entire cause. And then a third turn and I knew I was in trouble. You all know the rest. However most people would have bounced back and been back at work this week so why not me? Well PH is a balancing act. It is a constant battle to keep everything on an even keel and if one thing goes out of balance then it is like dominos, everything goes. The big problem for me was sickness so severe I couldn't take my oral medications. It only took two - three days for damage to be done but it is going to take two or three weeks, maybe longer, to get everything working together again in perfect harmony. I'd like to think of myself as a Formula one car but in reality I'm more like the clapped out tractor some skinflint farmer is trying to keep running.
I was shuffled off to hospital this morning for repeat blood tests in the hope that my return to meds and eating is having some positive effect. This is fairly urgent stuff as if I'm not improving then I might need supplements to boost things. In the Brompton I got the results of my bloods in a couple of hours. In my local hospital I'll get the results in about a week. Not being funny but I could be dead by then. There was no use protesting to a nurse who casually asked whether I really needed my oxygen so I've email the Brompton instead. Maybe they can kick bottom.
As regular readers know I am going through the process of renewing my DLA (Disability Living Allowance) claim, which runs out at the end of July. So far I've had to jump through several hoops including sending proof of the medications I take, letters from my consultants and a list of equipment I use in my day to day life. Despite all this I might still be required to attend an interview, have someone visit my home or provide yet more proof. This has not come as any surprise because I've renewed twice in the last seven years, they won't give me a whole life award for some reason, and each renewal has ended up in appeal, and in one case tribunal.
A woman claimed she was so Agoraphobic that she was a 'prisoner' in her home for the last fours years. Over that period she accrued £50,000 in disability benefits. She claimed she never left her bedroom and relied on a friend to do all her shopping etc. Now I have nothing against anyone who suffers from a phobia so severe it ruins you life like this. However what this woman failed to mention was that she worked as a travel writer and spent a great deal of her time abroad researching. Does that sound at all agoraphobic to you? No me neither. She was only found out when government officers decided to finally pay her a visit to assess her claims and was told by a neighbour that she was away on a month's visit to India.
Several points come to mind while reading this story and although I am angry at the woman, whom I hope gets a lengthy prison sentence, I am also angry at the system that let this happen. It seems to me that if you want to claim every benefit going then very little is done to stop you. However, if like me you want to retain some independence by working and only claiming enough to make that desire possible, you immediately come under suspicion of fraud.
There was some rejoicing then the firm brought in to carry out the dreaded assessment pulled out of their contract early because they were getting too much abuse. Forget the fact that they were so incompetent at their job that two thirds of their decisions were turned over by appeal courts. However now that they have gone we are back, I'm sure temporarily, to being assessed by those without any medical knowledge at all.
The only way the system is ever going to work is if claimants are assessed by clinicians who have some expertise in the condition being claimed for. So if you have Cystic Fibrosis your case should be assessed by someone with a working knowledge of CF. The same for suffers of MS, Parkinson's etc. Those with particularly rare illnesses such as PH should have their assessment done by experts. Not only could the presence and severity of the illness be judged without question by someone the claimant has confidence in but anyone trying to fake it would soon be spotted and removed from the process.
Of course all that is going to happen in the interim is more havoc while disgruntled claimants beat their way to tribunals and appeal courts. As for me, well I'm fully expecting to have to take up arms again and prepare to do battle with a faceless oik. After all I can't be disabled as I've only got high blood pressure. Right?
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